A few more fibro thoughts
January 15th, 2008
First, wow. While I seem to have a solid number of blog readers, they’re not usually particularly active when it comes to commenting. So I was very moved to read the few but meaningful responses to yesterday’s post, especially those from strangers who must have stumbled upon this blog while trolling the ‘net in response to the NYT article I mentioned.
I thought it was worth noting that the second half of today’s episode of The Diane Rehm Show on NPR was dedicated to the topic of fibromyalgia. (Thanks, by the way, to the many friends who tipped me off!) I was intitially frustrated by the broadcast, which kicked off with New York Times reporter Alex Berenson making more broad generalizations about both fibromyalgia and doctors’ opinions about it. (Berenson, for the record, seems to cover the business of drugs for the New York Times. He does not appear to be a healthcare reporter and seems to have written a grand total of one article about fibromyalgia. Which brings up another pet peeve of mine, this positioning of journalists as instant experts on any given topic. But I digress.) However, I thought the broadcast generally went uphill from there and I found the comments of the doctors featured to be, for the most part, heartening. In case you missed it, you can listen to it on the DR Show’s website here.
And as reluctant as I am to report on my own failures (on which, I assure you, I am an expert), I decided after some debate to post here that I was simply unable to continue my withdrawal from Effexor XR. By last night, I had been withdrawing for nearly three days and I could not handle it anymore. As someone who lives with chronic pain, I can take a lot. But I have never in my life experienced anything as uncomfortable and disconcerting as this withdrawal. I would, I can tell you without exaggeration, have walked through my withdrawal from alcohol or cigarettes again before going on another minute.
By midnight, I was sobbing uncontrollably in bed, my skin crawling, my brain “zapping” every time my eyes moved from side to side. But, worst of all, I was seized with what I can only describe as an unshakeable sense of doom, to the extent that I was convinced I wouldn’t live until morning if I went to sleep. Poor Chris was thrown for a loop, probably a bit terrified in his own right, wondering what had happened to his wife. After he did some research, we concluded that the best thing for me would be to take some Effexor and to take another stab at this withdrawal, far more slowly, when I return from St. Louis next week.
I’m not writing about this to garner pity. I’m writing about it because I am a reasonably sane person who has withdrawn from a thing or two in her lifetime — and I had wondered if the horror stories I read about Effexor withdrawal on bulletin boards could possibly have been true. I’m not exaggerating when I say that what I experienced yesterday was one of the most difficult experiences of my life. And I think it’s important to say so. I think it’s important to talk about these things, to keep giving a voice to these things. Because if we don’t, then I think what happens is the very thing I railed against in yesterday’s post — no one believes us.
Entry Filed under: Just Life
3 Comments Add your own
1. Candace | January 16th, 2008 at 2:38 pm
Whoa, I haven’t been here for a week or two and I’d missed that last post. I’d love to share something with you, and I hope you don’t take it as me being nosy or whatever, it’s just a genuine desire to share something that might turn out to be at least a little helpful.
What first caught my attention in your post was your mention of not being able to complete a sentence sometimes, and then the lupus or MS-like symptoms. These are classic symptoms of aspartame sensitivity/allergy, so if you do use any artificial sweeteners, you may find it helpful to go off those. My sister had a very frightening experience with aspartame that affected her speech and vision. She was able to think clearly, but not able to voice those thoughts coherently. Instead, random words would come out when she tried to speak. This was also the case with the sister and friend of two of dh’s coworkers (it came up when he told them about my sis) and more recently, a friend of ours from TKD. My sister’s vision issue was a spot in her vision like when a bright flash goes off in your face and you’re left with that spot in the way of things, except that hers wouldn’t go away. My friend who was just recently going through aspartame issues was also having the thought-to-speech problem. She didn’t have the spot in her vision, but she did have nasty headaches and random shooting pains behind one eye. As soon as she stopped the aspartame, the headaches and speech issues stopped, but the shooting pains have lingered. As I understand it, though, some of that can drag on for a little while after you stop.
In the course of researching aspartame after my sister’s “episode,” I learned that, like fibromyalgia, “aspartame poisoning” is considered by many to be imagined rather than real, and those who attribute any problems to aspartame are considered to be wack-job conspiracy theorists. :-/ But I also learned that it can cause symptoms that mimic MS, and that the damage IS reversible when the subject stops ingesting aspartame.
There are so many conditions out there that we still know so little about. And it’s SO frustrating to go up against a medical system that’s unwilling to dig deeper than the surface. My MIL suffers from fybromyalgia, and my mom from some weird random thing that tends to hit women of Scandanavian descent over age 50 - shoulder neck and hip pain. I don’t remember what it’s called.
I don’t even know where I’m going with this. Just sympathising, I guess. I’m so sorry to hear what you’re going through. And if you do eat or drink things with artificial sweeteners, you might try going a week without and seeing if it helps.
2. Julia | January 17th, 2008 at 3:37 pm
Thanks for the thoughts, Candace. I have actually tried avoiding aspartame and while I love me my diet coke, I didn’t notice a difference. I do find that seriously minimizing my intake of refined sugar and flour can have a significant impact on how I feel. I sleep better, I’m not as sensitive to the pain, I have more energy. Same with limiting my caffeine.
3. eve | January 22nd, 2008 at 5:55 pm
Just wanted to chime in here–my mom was diagnosed with fibromyalgia 10 years ago, tried meds, etc. She found that just by not taking Lipitor and changing her diet, as well as exercising, her syptoms improved greatly. It took about a year and she is not completely symptom free, but she is a million times better than before and is getting better as time passes. She eliminated aspartame and all other artificial sweeteners, cured foods–like vinegar, smoked foods, red meat, carbonated beverages exercises 1-2 hours per day, reduced caffeine, citrus fruits. She also takes supplements to reduce inflammation and a b12 shot monthly, I believe.
Keep blogging about these things. Tne info has to be out there! Effexor is terrible. It is overprescribed. I know three people who had the same experience that you had and had to take a bridge drug after weaning off of the effexor. Has your doctor suggested this? It’s usually a ssri, like prozac, but just temporarily. I actually had to watch my friend’s kids for a week while her husband was at work while she withdrew! Good luck! You can make it!
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